Project Summary

Background: Endometriosis, a painful disorder affecting 6.5 million women in the United States, is under-researched due to historical disregard for women's pain issues in medicine. Inadequate understanding of this condition leads to delayed diagnosis and limited treatment options. Black women and girls face significant inequities in endometriosis care, including longer delays to diagnosis, inadequate pain management and limited specialized care. These disparities stem from systemic biases, racial health inequities and the intersection of race and gender discrimination. Despite this history of inequity, there is limited patient-centered comparative clinical effectiveness research (CER) comparing interventions to improve endometriosis diagnosis and treatment for Black women and girls.

Proposed Solution to the Problem: Through virtual multi-stakeholder convenings, participants will contribute to developing and sharing a patient-centered CER agenda aimed at reducing disparities in endometriosis care for Black women and girls. This agenda will guide future patient-centered CER studies.

Objectives: This project aims to foster collaboration among patients, caregivers, providers and researchers. With the project team, they will create a research agenda including specific patient-centered CER themes and questions, focused on developing interventions to meet the needs of and outcomes important to Black women and girls with endometriosis.

Activities: The project team will complete a literature review on the topics of disparities in endometriosis diagnosis and treatment and interventions to improve endometriosis care. They will also conduct two virtual convenings, bringing together patients, caregivers, providers, payers and researchers to create patient-centered CER questions to compare interventions to improve care for Black women and girls who have endometriosis. 

Organizers will examine audio recordings of the discussions in order to generate a report that emphasizes the future patient-centered CER needs and questions related to improving endometriosis care specifically for Black women and girls. These resources will be shared among the endometriosis and healthcare research communities.

Projected Outcomes and Outputs: 

Short-term outcomes during the project: The project team will disseminate a roadmap of patient-centered CER questions and themes to improve endometriosis care for Black women and girls. 

Medium-term outcomes (0-2 years post-project period): Massachusetts Health Quality Partners (MHQP) and the Endometriosis Association (EA) aim to drive new initiatives to address endometriosis diagnosis and treatment disparities within the research and patient advocacy communities. This PCORI-funded project aims to establish an endometriosis stakeholder community, which will persist and expand after the project concludes, facilitating further research into the patient-centered CER questions raised during gatherings.

Long-term outcomes (3+ years post-project period): MHQP and EA will seek opportunities to collaborate with researchers and implement research projects to address the patient-centered CER themes and questions identified by participants during the convenings and outlined in the research roadmap.

Patient and Stakeholder Engagement Plan: The success of this project hinges on the active involvement of patients and stakeholders. Inclusive group discussions will be conducted, involving Black women with endometriosis, caregivers of pediatric patients with endometriosis, healthcare providers, researchers and payers. Two individuals with endometriosis or caregiving experience will collaborate with the organizers to develop materials for the meetings. A skilled facilitator will guide these discussions. Stakeholder input will be sought to validate research recommendations and ensure that the chosen research directions are practical and impactful.

Project Collaborators: MHQP and EA will co-lead the project.

Project Information

Barbra Rabson, MPH
Massachusetts Health Quality Partners
$97,344

Key Dates

November 2024
2023

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State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 3, 2024